I have come to the conclusion that doctors stink!
Called my rheumy today to give her a report because she told me last Wed. to call her and she would start me on Imuran today. I told her that the BP was better, edema and headaches were gone. Also told her that I have noticed that since I decreased my Prednisone from 60mg to 50mg on Sat. I have not been urinating as much. She said you're not on Methotrexate are you? I just saw her a week ago and she has a current list of my meds and yes I take Methotrexate and have for several years. She said I want to slowly taper your Prednisone and wait for some more of your labs to come back before we do anything else. I asked if any of them were back and she said only the complement levels and they were normal. I asked her if I was mistaken about starting the Imuran today and she said since I was doing better she would rather wait for the labs and then decide. I personally think the reason my kidneys are doing better is because of the high dose prednisone and I am scared they will start giving me trouble again when I start decreasing it. This is the MD that just last week gave me hope by acting as if she belived me and said something needed to be done now and put my diagnosis as SLE. Now I feel like I am going through the same crap I have been going through with the labs being normal and me feeling like the docs think I am crazy! I do have protein in my urine, low albumin and I am slightly anemic. The rest of the labs seem to come back normal. I have a very prevalent Malar rash, fatigue, joint pain, livido reticularis, CNS problems like severe headaches and worsening memory problems. I have had pleurisy, oral and vaginal ulcers, sudden onset double vision, hair falling out, sores in my scalp etc. Why is it so hard for a doctor to see that I KNOW something is wrong with my body. She did not say that she did not think it is Lupus, but I can see it coming because my labs are going to be normal. I am just about to get off all my meds and saw screw it. It must be in my head. I thought that the criteria said that you had to have any 4 of the 11 symptoms at any one time for a Lupus diagnosis. I have only ever had one ANA that was close to positive and it was Borderline and speckled. Does anyone know if labs will go back to normal if you are on immunosuppressants and Prednisone even if you are having a flare. I heard somewhere that it is possible for them to be normal because of the meds. This is one reason I am thinking of getting off my meds, so I can have labs done meds free to get an accurate test. Sorry this is so long and rambling. I am just sick and tired of being sick and tired and having no proof in the bloodwork to prove it. If anyone has any words of wisdom I would really appreciate it, because right now I am feeling like I am crazy.
Ask for a copy of your blood work and see which lab conducted the ANA test. If it was done by Lab Corp or the ANA value is returned as a single number, I would demand to have your blood tested by a lab that still has a human look at the serum and gives the results as a titer.
Have you gone to a Nephrologist (kidney doc). I would see one in addition to the rhematologist. You should have both kinds of doctors.